A Summary of Data Driven Themes

Table 8 and Table 9 respectively provide summaries of data driven themes and sub- themes associated with patients‘ subjective experiences of treatment for CLBP relief and their satisfaction and dissatisfaction with treatments for CLBP relief.

Table 8: Summary of Data Driven Themes and Sub-Themes Associated with Patients‘ Subjective Experiences with Treatment for CLBP Relief

Impact of CLBP and its treatments (medication and physiotherapy)

Pain  Duration

 Severity

 Tolerability

Symptoms  Slicing

 Twinge

 Pins and needles

 Stabbing

 Numbness

 Swelling

 Burning

Physical  Functioning

 Activities of daily living

Social  Functioning

Emotional  Anxiety

 Fear of movement

 Worry

 Uncertainty of the future

 Depression  Motivation  Embarrassment  Annoyance  Frustration  Irritability  Miserable

Impact of CLBP and its treatments (medication and physiotherapy) Confidence  Cautious  Lack of confidence Sleep  Quality  Difficulty  Awake Tiredness Relationships Sex life Distress Self esteem

Table 9: Summary of Data Driven Themes and Sub-Themes Associated with Satisfaction and Dissatisfaction with Treatments for CLBP

Satisfaction and Dissatisfaction with Treatments for CLBP Pain

Symptoms

Effectiveness  Removes or minimises pain

 Return to normal functioning and can perform activities of daily living

 How fast treatment works

Side effects  Incidence

 How much of a problem they are Health-related quality of life

(see Table 8)

 Physical functioning / ADLs

 Social functioning  General health  Emotions  Distress  Self esteem  Confidence  Tiredness  Sleep

Satisfaction and Dissatisfaction with Treatments for CLBP

 Relationships

 Sex life

Preferences  Mode of administration (tablet, capsule...)

 Taste of medication Convenience

Information provided  About the causes of back pain

 Possible side effects of medications Adherence as recommended by HCPs  Medication regimens  Exercises Involvement in treatment decisions Diagnosis  Undiagnosed  Misdiagnosed Trust and confidence in

HCPs

Communication with HCPs  Level of empathy

 Active listening Satisfaction with healthcare  Private/NHS

 Referral times

 Waiting times

4.5 Discussion

The findings of this study suggest that satisfaction and dissatisfaction with treatments is a multidimensional concept and provide some support for a model similar to Fitzpatrick‘s (1984) ‗multidimensional‘ perception of satisfaction. When exploring the concept of satisfaction with treatment (medication and/or physiotherapy) in patients with CLBP, patients‘ responses to open-ended questions generally described positive aspects of treatment, such as receiving the correct diagnosis, and being ‗happy‘ or ‗pleased‘ with

out everyday activities or going to work are very important concepts that form part of satisfaction with treatment.

Patients were even more descriptive about dissatisfaction with treatment, which was generally perceived as the opposite of satisfaction with treatment and thus supports the view that satisfaction and dissatisfaction are on a continuum (Collins & O'Cathain, 2003). Dissatisfaction includes negative aspects of treatment such as being misdiagnosed or undiagnosed, a lack of trust and confidence in clinicians, lack of information (about back pain, its treatments, and potential consequences of treatment). Communication by healthcare professionals is important, and dissatisfaction with treatment seems to also be related to perceived lack of empathy and lack of active listening by HCPs to the patient.

These findings are consistent with those of a systematic review which cited aspects of treatment for back pain about which patients have expectations or express satisfaction in qualitative studies (Verbeek et al., 2004). Like this study, Verbeek et al found that associated treatment aspects included ‗diagnoses/finding cause of pain‘ where patients stated that there wasn‘t really an initial diagnosis and clinicians weren‘t really certain what was going on. ‗Confidence based relationship‘ was another aspect of treatment where patients reported lack of faith in their HCPs. ‗Information/instructions‘ was key, since patients reported that they needed more knowledge and direction regarding what to do. Verbeek et al. (2004) findings regarding communication with HCPs and listening are also confirmed in this study.

Limited efficacy of treatment is a major theme of dissatisfaction with treatment. Patients report dissatisfaction when treatment doesn‘t succeed in removing or minimising the back pain and does not enable the patient to return to normal functioning, thus limiting their HRQoL. These results are consistent with Lewis, Bradley, Knight, Boulton, and Ward

(1988), whose results demonstrated an association between treatment satisfaction and efficacy/effectiveness in terms of perceived glucose control in diabetes.

In this study, experiencing intolerable side effects were also an important theme related to dissatisfaction with treatment. These findings are in line with Huskisson et al., (1992), who found that overall satisfaction was associated with absence of pain and side effects in rheumatoid arthritis.

This study also revealed that convenience of treatment regimens and the mismatch of medication compared to patient preferences in terms of for example mode of administration were also associated with the concept. Dissatisfaction was also associated with non-adherence to treatment regimens as recommended by doctors. These results are supported by previous research which indicated that patients with iron overload receiving infused iron chelation therapy were less satisfied than those receiving oral iron chelation therapy, and that satisfaction with iron chelation therapy was significantly associated with never thinking about stopping chelation therapy (a proxy for adherence) (see for example, Rofail et al., 2008; Cappellini et al., 2007; Payne et al., 2007). However, it should be noted that the direction of the association between satisfaction and adherence warrants further exploration since it‘s not clear whether treatment satisfaction as an independent variable influences adherence to medication regimens, or whether it is adherence as an independent variable that influences satisfaction and dissatisfaction with treatment. The role of efficacy and other concepts in the associations also require further exploration.

Findings from these in-depth interviews also suggest that patients are perhaps not as satisfied with their treatment as they may initially indicate. For example, the majority of patients indicated that they were satisfied with their treatments for CLBP relief. However, further discussion revealed that patients still experienced CLBP and that this appeared to significantly impact their everyday lives in terms of physical functioning, activities of daily

living, emotional impact, social functioning, and relationships. These findings come as no surprise, since another study reported similar results in patients receiving antipsychotic medications (see for example, Gray et al., 2005).

The findings from this study provide support for other CLBP studies, such as with regard to patients‘ actual experiences of CLBP and its treatment in terms of intensity of pain and impact on quality of life which is well documented in the literature (see for example, Roland et al., 2007; Keeley et al., 2008; Pain in Europe, 2003). Further, the actual experiences patients report in this study are similar to other CLBP studies that have used a qualitative approach. For example, patients with CLBP seem to describe their experiences of treatment regarding limited efficacy and this is similar to patients‘ descriptions of failed treatment approaches (Liddle et al., 2007), and also patients in this study describe lack of trust and confidence in clinicians which is similar to another study which showed lack of trust in research, and researchers and possibly also HCPs (Glenton et al., 2006).

Unexpectedly, expectations were mentioned by only one patient in this study in relation to satisfaction with treatment. Closer examination of the interview transcript and the discussions between the interviewer and the patient revealed that the patient did not mention expectations spontaneously in response to any of the open-ended questions. In light of this and given that it was only mentioned briefly by one patient in response to being probed by the interviewer, expectations were not added to the final thematic map of satisfaction and dissatisfaction with treatments in CLBP. Further research to test this decision is warranted. The literature on expectations and satisfaction is ambiguous (see section 2.6.4). Although several studies suggest expectations are related to satisfaction with treatment (Jackson & Kroenke, 1997; Sitzia & Wood, 1997), expectations, like satisfaction, lacks an operational definition and there is a lack of consensus opinion

regarding what constitutes patient expectations. Further, some researchers have questioned patients‘ abilities to form an opinion of what to expect from treatment, especially if they are treatment-naive or have not received health services before (Williams, 1994). With this in mind, the relationship between satisfaction and expectations requires further exploration.

Despite this, it is important to acknowledge that there are a number of studies that qualitatively document LBP patients‘ expectations from treatment (Liddle et al., 2007; McIntosh & Shaw, 2003; Rives & Douglass, 2010; Verbeek et al., 2004; Yardley et al., 2009). On reflection, one of the possible reasons why expectations did not emerge as a major theme in this study may be due to the questions in the interview guide which focused more on patients overall experiences and the notion of satisfaction and dissatisfaction. For example, a closer examination of Liddle et al. (2007) shows that they asked a number of open questions related to patients‘ expectations during the focus groups. For example, ‗what are your expectations from treatment?‘ and ‗how did you decide if your expectations are met or not?‘ Therefore future studies could consider defining the concepts of satisfaction and dissatisfaction further as they relate to expectations and the extent to which they have been met. Future studies should pay particular attention to the questions put to patients.

Finally, it is apparent from this study that satisfaction and dissatisfaction with treatment is part of a larger concept of satisfaction with healthcare; such findings support Weaver et al.‘s (1997) treatment satisfaction conceptual framework. However, evidence from this study reveals that the boundaries between the two concepts are not explicit to patients, and further research is warranted to establish empirical evidence to support the concepts and their association.

4.5.1 Strengths and Limitations

Some strengths and limitations of this study warrant comment. We can assume a certain degree of patient homogeneity because a homogenous sampling strategy was used, and thus patients were chosen based on some common criteria; in this case they were patients with CLBP taking medication and/or receiving physiotherapy to help them with their back pain problems. Further, the more similar the patients were in their experience as it related to the research concept of interest, the sooner it can be expected to reach saturation (Guest et al., 2006). In this study, the similarities appeared to be sufficient to produce a fairly exhaustive dataset within ten interviews.

The results of this study cannot be generalised to patients‘ receiving physiotherapy alone, as all patients were taking medication and a few had mentioned that they were using other methods to help them with their back pain. Also, whilst the data that emerged from this study was based on robust methods and thus the findings can stand alone, it is important to re-emphasise that the main purpose of this study was to use the data to develop a questionnaire (see Chapter 5).

Furthermore, there were a few concepts such as ‗the motivation to continue taking medication‘ and ‗flexibility of taking treatment if you are travelling‘ appear in the satisfaction literature (see Weaver et al., 1997) but did not emerge as key themes in this study. One reason for this may be that the sample was not diverse enough, or that these concepts are not specific to patients with CLBP receiving medication and/or physiotherapy. Note, though, that the satisfaction topics identified in Weaver et al., (1997) were found in a comprehensive literature review rather than the in-depth patient interviews used in this study that are recommended for development of conceptual models and questionnaires (see for example, Acquadro et al., 2003; Food and Drug Association, 2009).

In addition, it should be noted that there appears to be some overlap between the conceptual model of CLBP and its treatments and the thematic map of satisfaction and dissatisfaction with treatments for CLBP, and the proposed associations within each are not definite causal links. Thus, further empirical work is necessary to test the validity and reliability of the proposed conceptual model and thematic map. The conceptual model and thematic map do not show which concepts are more important than others and further studies should explore this question as well.

One aspect requiring further consideration is that the use of a purposive homogenous sampling strategy may in part explain a sample comprised of mainly females, of narrow age range and occupational background. Thus, additional studies could explore subgroups and identify thematic variability within a sample to establish the cohesiveness of themes/subthemes and its association to sample heterogeneity. Further, studies using other purposive sampling strategies could be considered and may provide alternative insights into patients‘ subjective experiences. For example, maximum variation sampling could help to establish central themes across patient variations such as patients with CLBP of different ages, or those with different occupational backgrounds. Alternatively, extreme case sampling could help consider patients‘ subjective experiences or the concept of treatment satisfaction in cases which are unusual or special in some way. For example, one might expect that patients with CLBP who were misdiagnosed or undiagnosed on several occasions are likely to have different experiences.

It is important to acknowledge that the interview guide contained some closed questions that resulted in yes or no answers, and which were then followed up by, if yes, why, or if no, why not? Whilst such questions make it easy for patients to answer, the control of the interview generally remains with the interviewer and such questions may limit the detail and richness of data or result in shorter answers compared to open

questions. Open questions usually provide the interviewees with control of the conversation, and encourage patients to think and reflect as well as provide opinions and feelings. Also, they are often considered more objective and less leading than closed questions.

Finally, to ensure confidentiality and for the convenience of patients, the interviews were performed in an enclosed office within Stepping Hill Hospital. However, whilst the room was quiet thus helping to facilitate discussions, it is rather official, and not the most relaxing and comfortable of environments. Consequently, such an environment may not necessarily help to get the most out of patients in terms of detailed discussions. Other environments such as interviewing in their home settings may be considered more comfortable for some patients. If the interviews were performed in patients‘ homes then some patients may have felt that the information provided to the interviewer was private compared to a hospital setting where they may consciously or unconsciously associate the interview questions with the environment and ultimately health professionals. Given that the interview topics centred on treatment satisfaction, this may have affected the results. For example, patients may have tried to provide more favourable responses. On the other hand, some patients may feel that interviews performed at home are less private especially if family or friends are about, which may in turn also affect the results. Further research could explore patients‘ subjective experiences and the notion of treatment satisfaction in CLBP using more open-ended questions and in different environments.